Happy 6th

Six years ago today my world, the world of my 3 year old son, and my family’s world was turned upside down by six little words:  “Your son has Type 1 diabetes.”  We were all suddenly thrust into a world of carbs and insulin.  My little man was thrust into a world of endless needle sticks and food restrictions.  My husband and I were thrust into night upon night of interrupted sleep. 

Looking back on that day I had no idea what was really in store for us.  I knew it was going to be hard, but I couldn’t fully comprehend just how achingly hard it would be.  All I knew was how hard it was to stick my child with a needle or how hard it was to tell him he couldn’t eat or drink something.  I know now, that was the easy part. 

I now know the hard part is the fear.   The fear of waking up one morning and finding him dead in bed.   The fear that I’m really not strong enough to handle it; that I have no clue what I’m doing and that instead of helping him I’m really harming him.  The fear that one day he will rebel against this disease and just stop managing it at all.  The fear of blindness, limb amputation, kidney failure.  The fear that there will never be a cure. 

For six years I’ve been carrying around these fears.  The pain from this fear isn’t as stabbing as it once was.  It’s softened around the edges, but it’s still there.  And, I suppose it always will be.   I’ve learned to live with it, not to let it rule my thoughts like it once did.  Yes, it’s brought to the forefront from time to time, like when I hear of another child whose life was cut short by this terrible disease.  But, for the most part it sits quietly in the back of my brain. 

Every year we “celebrate” Riley’s anniversary.  We go out to the restaurant of his choice and for an activity.  This year it is Sappari and bowling.  People often don’t understand how we can celebrate such a thing.  I once felt that way too.  But, we are not celebrating that he got diabetes.  We are celebrating that it hasn’t beaten him.  We are celebrating that he is free from complications, that he’s never been hospitalized, and, basically, that he’s living and breathing.  Not just living and breathing but having a wonderful time doing it. 

I celebrate the fact that he can still participate in any activity he wants.  He is so happy.  He loves life.  He loves his video games and his big brother.  I celebrate the fact that while this disease has left scars on his body, it has not left scars on his heart or his soul.  And, if anything, this disease has made him a better person, a more compassionate person. 

And, I celebrate all that it has taught me.  I believe there is a lesson in anything if you just look for it.  I’ve learned that you can chose to be happy or you can chose to be miserable, right where you are.  The situation you are in may not be optimal.  It may not be what you always dreamed of.  But, it’s where you are.  Make the best of it.  I’ve learned not to take anything or anyone in your life for granted. Tomorrow they may not be there.    Don’t take anything for granted that you have right now, not your health, not your family, not your relationships. Six years ago I thought I could never ever be happy again.  I’ve learned not to look towards the future for my happiness, but to look right where I am right now.  

Right now is really all that I have.  And, right now I have a little boy with the most beautiful brown eyes I’ve ever seen.   He’s happy and, by God, he’s healthy.  He’s got an insulin pump tethered to his side and a huge smile on his face.   And, right now, that makes me happy.

“To get up each morning with the resolve to be happy... is to set our own conditions to the events of each day. To do this is to condition circumstances instead of being conditioned by them.” Ralph Waldo Trine

Reading A Cure for Emma

Today I began reading the book A Cure for Emma by Julie Colvin. For those who may not know the book “chronicles a mother’s quest to heal her child from a nearly invisible disease: type 1 diabetes”.

I purchased the book online the first day it came out. I had been following Julie’s progress on writing her book at her web page and I’m also friends with her on Facebook. I was eager to purchase the book for two reasons. One, because I was curious to see what she had to say, was curious to hear her story, her journey. We parents of kids with diabetes all have a story as to how we got here. We all have our lives before and after the disease entered our lives. I have always been interested in hearing other parent’s stories about how diabetes came to take up residence in their lives. I’ve read hundreds of stories written by other parents. And, there has not been one single story, not one, where I couldn’t feel the pain, the exact pain they felt when they learned that their child had type 1 diabetes. Whenever I read these stories it always amazes me that no matter how different we all are, no matter what our life experiences have been, we are all still, in our rawest form, the same. It’s weird and, at the same time, comforting to know that.

The second reason I bought the book was because part of the proceeds is going to support my most favorite cause in the world: finding a cure for type 1 diabetes. Not only is it going to support finding a cure, but it is going to what I believe to be the most promising research: Dr. Faustman’s research being done at Massachusetts General Hospital.

The book arrived in the mail several days ago. But, I finally got up the courage to start reading it today. Courage; why would I need courage to read a book? I read constantly. I really have no idea how many books I’ve read just this summer, but it’s a lot. I’m always excited about starting a new book. I was also excited to read Julie’s book. But, I was also scared.

You see, over the last 5 years I have honed the skill of pushing emotions down. I’ve learned to deal with the task at hand and not feel the moment. It sounds sad, really, when I say it. But, it’s true. It’s called survival. Because if I really took time to process all that type 1 diabetes throws at my child every day, I would be in the insane asylum or dead. Either way, I would be of no use to my child, who now needs me more than ever.

I knew that by reading this book I wouldn’t be able to keep those emotions at bay. And, I was afraid that once those emotions where brought to the surface again, they would overwhelm me.

I sent a little post to Julie that I would start reading the book Monday. Well, Monday came and went, as did Tuesday, and I didn’t start. I have no excuse. I just had surgery 5 days ago and have been lying around doing much of nothing. But, finally, today, I started the book.

I literally took a deep breath, opened the cover, and began to read. And, I’ve done better than I thought. I was on page 10 (“Then I scan her chest for signs of breathing, as mothers do the world over. I’ve always done this, even pre-diabetes. But, now I’m prepared at a moment’s notice for a crisis.”) before I had to blink back the tears.

I’ve made it to chapter 7 with no real break downs. I’ve stifled sobs a few times, but no actual tears have escaped yet. I’m not exaggerating when I say that most of the pages have been out of focus, blurred due to the tears in my eyes. Even the stories that seemingly don’t have anything to do with diabetes, like when she spent time with her long-lost friend who was dying of cancer, make me suppress the tears. Because I know that “seemingly” it doesn’t have to do with diabetes, but that in reality it does. In reality, once it’s in your life, everything, past, present, and future has to do with diabetes.

I know that a break down is coming. Eventually, the flood gates will open and I’ll weep for my child. My guess is it will happen tonight after Riley’s in bed. You see, I made a promise to myself that Riley would never see me cry about his diabetes. And, I’ve kept that promise for almost 6 years now. I don’t intend to go back on that promise now, or ever.

I’m going back to reading now. I just thought I’d give you guys a heads up. I’ve said countless times that this blog is my therapy. I will probably need lots of therapy after reading this book. So, there may be a blog explosion for a while. Or maybe not, maybe I’ll be OK. Actually, I know I’ll be OK. I don’t have a choice really. The question is: how much grieving will I have to do before I get back to a good place again?

A Rant and a Letter to the Lady at the Gate

Seems I only come here to rant about diabetes now. Not like that's not what I was doing almost 6 years ago when I started this blog. Back then my posts where more melancholy. I also had a few hopeful and uplifting posts. But, now, I think I just come here to complain.

My blog is my therapy. And, at this point in my diabetes journey, I need a place to vent and whine.

I feel bad about it because there is so much more I could be posting. Like: Holden's wedding pictures. Yes, that's right; Holden has been married for 2 months now. He's still in college and about to start his junior year.

Or, I could talk about the new house we bought in January. Or, the awesome grades that Riley got this year.

But, no, I'm here to vent. Complain. Scream into the wind.

Riley is very active in sports. He plays baseball, spring and fall soccer, and basketball. Right now he is playing baseball. He made the all star team and the tournament is this week. The park where he is playing has a very strict policy regarding outside food and drink. And, I understand that. It is a local park that is trying to make money so that the kids have somewhere to play. I don't mind supporting that at all (even though a bottle of water is $2).

But, they only sell sodas, water, and regular PowerAde. To say that it has been hot in NC, is and understatement. It's been in the 90s here and when you add in the humidity it feels like its 100+. So, I had been taking PowerAde Zeros for Riley. He had been putting them in his bat bag and walking through the gate and no one was the wiser. But, yesterday, in his excitement to join his team he took off with his bat bag before I could put his drink in it.

I was going to get him to come back and put the drink in the bag. But, my mom said she would just take it in. She said she would explain why he had to have it. She was sure there wouldn't be a problem. Me, I wasn't so sure. That's why I had been sneaking drinks in all week. I've had to fight that battle too often. I'm a conflict-avoider by nature. I was just trying to let my child have his drink without having to fight for it.

When my mom got to the gate the woman told her she was not allowed to bring in the drink. My mom calmly explained to her that Riley has diabetes and they did not sell any sugar-free sports drinks. The woman then said that she had diabetes too and drank regular PowerAde. Uh, lady, wrong thing to say. I very calmly told her that she is free to do what she wants but that my son would not be drinking a regular PowerAde.
Her saying this flipped a switch in Michael and he started to flip out a little bit. He started off by asking is she was Type 1 or Type 2. When she practically screamed back that she was Type 2 he went into a mini lesson on the difference between Type 1 and Type 2 diabetes. Instead of listening and trying to understand what he was saying, she said, “Well, he can just drink water.” OK, lady, mistake number two.

Her first mistake was pulling out her diabetes card. If you’re going to pull it out at least use it to let us know you get where we’re coming form. Don’t use it to judge us and put the way that you deal with your diabetes onto our son. Everyone’s diabetes is different, especially when dealing with two different types. I know a lot of people with Type 1 diabetes and they all have to do things differently. I know some kids who do drink regular sports drinks when they play games because they need the carbs to keep their sugars from going low while they are playing. That is not the case for Riley.

Her second mistake was making a call on what our child should be drinking. Yes, he could just drink water. On occasion he’s had to do just that because I have forgotten to bring him a drink. But, should he have to drink water instead of an electrolyte-replacing drink because of someone else’s ignorance? My answer to that would be a big fat NO.

Michael snatched the drink from me and proceeded to walk in with it anyway. I took it from him and told him not to make a big deal about it that I would just take it back to the car. Of course, my intention was to get Riley to go to the car, put the drink in his bag and walk back through the gate. That drink was going in one way or another. Besides, the woman was one of those people who can only see things from her perspective. There was no talking to her. She was too busy arguing and trying to be right to actually listen to what we were saying. So, trying to avoid drama I took the drink back to the car.

While I was taking the drink back to the car Michael said he turned his back to the woman and told her she just needed to stop talking to him. He said she kept talking and called him pathetic twice and then went on the say it was amazing what people would do to get out of paying $4 for a drink. It’s a good thing I didn’t hear her say that, because that’s when I would have lost it. Ignorance is one thing, but attacking someone else is a whole other ballgame.

That is when Michael turned to the woman sitting next to her and asked to speak to who was in charge. She immediately took him to a man. To the other woman’s credit, she was also trying to get the lady at the gate to understand that Riley needed that drink. When Michael found the guy in charge, my mom was already talking to him and explaining the situation.

By the time I got back into the park, the matter had been resolved and Michael was allowed to go back to the car and get the drink.

Michael did cause somewhat of a scene at the front gate. I noticed some other parents standing there with there mouths gaping open. You see, we’re normally pretty quiet. We don’t like to make waves and pretty much keep our mouths shut. But, after almost 6 years of dealing with people’s ignorance of Riley’s disease, Michael snapped. I’ve snapped on people before. But, yesterday I just didn’t have the energy. I was tired of fighting but, thankfully, Michael took up the slack for me.

While I was sitting waiting for the game to start I was thinking of some of things I wanted to tell the woman. Not ugly things, but things to try and make her understand where we were coming from.

So, I decided to write a letter. She will never see this letter, but my hope is that one day someone will read it and understand a little better what it’s like to live with Type 1 diabetes.

Dear lady at the front gate,

I wanted to explain to you why it was so important to us that we get to bring in a sugar-free sports drink for our child. I’m guessing that since you were working at the tournament that you have a least one child. Maybe as a mother you can understand. You see, my son was diagnosed with Type 1 diabetes when he was only 3 years old. He has no memory of life before having to be jabbed with needles on a daily basis. He has no idea what it’s like to just eat whatever he wants. He doesn’t even know what it’s like to play a game without sticking himself with a needle at least once, but often, several times. I don’t tell you this to gain your sympathy. Neither he, nor I, wants your sympathy. We want you to understand what it’s like. Really understand the battle he fights every single day just to stay healthy. Not to sound dramatic, but it is a battle. Everyday we fight a battle for his health. Just today I had to fight a battle with him over French fries. He loves French fries, but we fight battles with him over French fries because it runs his sugars sky-high. We fight this battle to try to avoid complications like kidney failure and blindness. He hears on an almost daily basis why he can’t have certain things that other kids take for granted. This battle is emotionally draining on all of us and some days are worse than others. I guess we are a little battle-weary. So forgive us if we don’t want to have to fight with someone just so he can have a sugar-free sport drink.

And, you were correct when you said that he could just drink water. But, why should he have to? In the heat and humidity an electrolyte replacing drink is better for him. And, frankly, that’s not your call to make. He deserves to have a sports drink like everyone else. If your park sold sugar-free sports drinks we would gladly buy one. But, they don’t. Again, not looking for sympathy, but my son will always be a little different from the other kids. No other kid on his team sticks their finger through the dugout fence to have their sugar checked. No other kid chews glucose tablets while running out to play a base while their mother silently prays that he doesn’t pass out from a low sugar. No other child on his team is hooked to a life-sustaining machine 24/7. You don’t know how happy he was when we found PowerAde Zero. He was finally able to have a sports drink instead of water. To you, it may seem insignificant. But to a little boy who is used to always being different it is like heaven.

My hope is that you will have a little more compassion for others in the future. Everyone has their own battle that they are fighting. And, a lot of us are just plain tired of fighting and would like a little understanding for a change.

Sincerely,
Riley’s mom

Gotta' Look For the Blessings

Today my little man is 9 years old. Yes, 9. Can you believe it? For those who have been following along with this blog since the beginning, he was 3 when I started writing it.


It’s strange how certain events bring diabetes to the forefront. As I’ve said before, most days diabetes is way in the background. There are the “agghhhh!!!” moments from time to time; like night before last when I had to change his needle at 3:30 AM and he begged me not to as he stood there with sleep in his eyes. But, as usual, he took it all in stride. He let me change his needle and then lay down to sleep with his hips slightly askew as not to lay on the now tender spot where I had just jabbed him with a needle. While all that was not fun, it was just one of the many things that come up every day when you live with Type 1 diabetes.


But, today, the day that I celebrate bringing my child into this world, things seem a little harder, a little rawer somehow.


Don’t get me wrong, I’m not feeling like doom and gloom today. It’s a happy day. Riley is elated. He is having a birthday party with his friends after school and a few of them are sleeping over tonight. He is really excited about the sleepover.


Tomorrow we will be having a family birthday party. That is when he will find out that we will be flying to Disney World next week for his birthday. I’m so excited about that and know that he is going to be thrilled about it.


I think what it comes down to is that you can never just be with this disease. Every birthday, every Christmas, every great family vacation, diabetes is there. It has to be factored into everything. And, while most days it’s second nature to do so, some days, like today, it’s just exhausting. I know the other parents of kids with Type 1 understand what I’m saying; like I said, not trying to be doom and gloom, just venting a little.


On the way to work every morning I have prayer time. I turn off my radio and just pray. Today I did my usual prayer for safely for my family. I prayed for those who have recently lost loved ones as well as those who are sick or having surgery today. And, I prayed a special prayer thanking God for letting Riley make it to 9. Morbid? Maybe. But, I know I am blessed that he didn’t die at diagnosis. I am blessed every single morning when I tiptoe into his room and see his little chest rising. And, most of all I am blessed that God chose me to be his mom.

Why I Love My Alarm Clock

(**Note: This post was written a while ago and I never got around to publishing it.)

I’m not what one may call tech savvy. I do pick up on how to use new technology pretty quickly, but I’m not really into all of the latest gadgets. For example, I don’t have Internet on my phone nor do I own an ipod or mp3 player. I have recently begun to text, only because it is Holden’s chosen form of communication with me.

I wouldn’t say I’m old school. More like “not as young school”.

The thing is as much as I’m not into technological advances; I get giddy when I read about the advances in insulin pumps and CGM (Continuous Glucose Monitors). When Riley was diagnosed 5 years ago CGMs were talked about but didn’t really exist. Now, I “know” several people who use them or their child does. When CGMs first came out they seemed archaic, at best. But, recently it seems they are becoming more and more reliable.

Still, I’m apprehensive to begin using one with Riley. It’s not really the cost, although that does have to be taken into consideration. Because if I really thought that it would make a huge difference in Riley’s diabetes control, I’d get a second job to pay for it if I had to do that. With his A1C in range I’m not sure it’s really worth it right now. It took me a LONG time to become accustomed to having him hooked to a machine 24/7. It was years before I didn’t cringe at the sight of his pump tubing snaking out of the waistband of his pants. I’m not sure I am ready to hook him up to another machine. I don’t think Riley would like two pieces of hardware hanging off of him.

Also, I’ve heard the needle changes are brutal. I’m not ready to subject Riley to that if we don’t have to. My hope is that over the years they will become even more accurate and eventually be integrated into one piece of hardware (by Animas, I love them). And, they will downsize the needle a bit.

I’m not opposed to trying one out. I’m just not ready to jump on the bandwagon and buy one. To be honest, the main reason I would like to have one is for nighttime. I wish there was a way that he could only wear it at night, but I know that it takes a while to calibrate and all that, so that’s not an option right now. I have to be honest, since the story of the 13 year old girl who never woke up in the morning, the victim of dead in bed syndrome, I’ve let Riley run a little higher at night. It’s not a conscious decision, really. I’m just more wary about giving insulin if he’s high. I’ve cut back on the amount he gets which, of course, makes him run a little higher.

My husband and I get up more to check on him too. And, we’ve been sleep deprived for 5 years now. Every minute of sleep is precious to us. But, I can’t seem to go as long between checks now. It doesn’t help that a few nights ago at around 1:30 AM Riley’s sugar was 65. He drank a juice and got a basal decrease. 20 minutes later, he was 63. After another juice he was fine for the rest of the night. But, I can’t help but wonder what would have happened if we had not gotten up to check when we did. What would have happened if the alarm clock didn’t wake us and we hadn’t done the check 20 minutes later? Would his liver have helped out and kicked in some glucose? Or would his sugar have continued to plummet? Would he have become a victim of DIBS?

Speaking of technology, I am completely dependant upon my alarm clock. It doesn’t just help me get to work on time; it helps me insure my child’s safety. Most people probably buy cheap little alarm clocks. They will get the job done just fine I guess. Not me, I buy top of the line alarm clocks, the ones with all the bells and whistles. You see, when you are constantly resetting your alarm for every couple of hours every night to the week, alarm clocks don’t last as long. I found out it’s best to spend a little money on them. They will last longer.

I always have to make sure that the alarm is loud enough to wake us. You see, when the alarm goes off every couple of hours your sleep deprived brain will learn to ignore it. Right now the alarm clock is on my side of the bed. In a while, we’ll switch it to Michael’s side of the bed. Eventually, I begin to hit snooze and ignore the alarm, sometimes for more than an hour. That’s when I know it’s time for it to go to Michael’s side of the bed. And, when he starts to ignore it, we switch it again.

We recently bought a new alarm clock. This time I bought one with some sort of internal battery that keeps time even when the power is out. Before, we had an alarm clock that used a 9 volt battery so that when the power goes off it will continue to work. Well, turns out, our power went out and the 9 volt was dead and so the alarm didn’t work. The alarm has to work. ALWAYS. So, I shelled out a little more for an internal battery thingy. It helps me sleep a little better on stormy nights.

This is one of those “little things” I’ve talked about before. I’ve said it’s the needle sticks and the food restrictions that get people's attention. But, the fact of the matter is, that for those of us that live it, it’s the “little things” that weigh us down. The not-so-normal things that take the toll on our minds and the minds of our children. The “little things” that make him different. The “little things” that make me different. I mean, it’s not normal to love your alarm clock. But, I do. And, as much as I love the alarm clock, I absolutely positively love, love, love Riley’s little blue pump. I cannot imagine life without it.


As much as I don’t really get into technology, I am still very thankful for it. Who would think that an alarm clock is so important? But, it is to me.

JDRF Vs. Faustman

About three weeks ago I came across a post by DOC founder Allison Blass. I was very interested to read it for a couple of reasons. One, it talked about losing faith in a cure for Type 1 diabetes. And, two, it was written by Allison. I don’t really know Allison, but I kind of do in a round about sort of weird internet way. Allison’s blog is one of the first blogs I started reading when our world came crashing down about 5 and ½ years ago. She also interviewed me one time for a magazine article that she wrote. And, we even got a Christmas card from her once. So, I was interested to see what she had to say on the subject. I think she did a great job writing the post. She was able to state why she felt how she did without begrudging others for feeling differently.

Prior to reading her post, I had read a little chatter on the internet about JDRF saying they were not as focused on a cure, or something to that affect; or more like they were focusing on a cure still, but also focusing on better treatments of Type 1 diabetes. I never gave it a second thought, really. It wasn’t news to me. It didn’t anger me. It didn’t shock me.

You see, when Riley was diagnosed in October of 2005, the minute we got home from the hospital I began to scour the internet for any information I could find. Inevitably I searched about a cure. Of course, JDRF was one of the first web pages to pop up. After all, JDRF is an acronym for Juvenile Diabetes Research Foundation. I read about them. I read their mission statement. I did my research on them.

I also found some articles written about research being done at Massachusetts General Hospital by Dr. Denise Faustman. I read about her research. I read about what she had done with mice. It all made sense to me. Something just clicked inside of me and said, “This woman is dedicated to finding a cure”. And, I was hooked. She hadn't even begun human clinical trials yet.  The phase I of her trials began in January of 2008.  She is now raising money to fund Phase II of the project. 

The next year, one day after Riley’s one year anniversary, I held the 1st annual Walk of Hope. Every cent raised went to Dr. Faustman’s research. I’ve held several other walks since then. All of the money went to Dr. Faustman’s research. Every walk, every fundraiser, every penny saved in Riley’s “hope jar” (featured in my blog profile pic), goes to her research. And, it always will, until the research ends.

Have I supported JDRF? I guess I have a little. I have donated to others who have walked to raise money for JDRF. Some people I know and some I don’t. Riley had a T-shirt sent to him several years ago by a little boy who he will probably never meet. I “met” his dad through his blog and donated to his walk. In turn, he sent a T-shirt to Riley. JDRF is prominently displayed on the shirt. Riley wears it with pride.

I don’t have anything against JDRF. But, and it’s just my personal opinion, they are not really focused on a cure. There, I said it. I know that infuriates some people, but that’s how I feel and I have felt that way for over 5 years now. I do believe they are very committed to finding better ways to manage diabetes. When Riley was diagnosed, continuous glucose monitors were talked about, but not on the market. I remember that even back then JDRF was throwing around an idea about a closed loop system, AKA: an artificial pancreas.

I feel the same way about it now as I did then. It’s quite simple really. That’s not a cure. I want a cure. Period. I want my little man to live his life without depending on a drug to live. And, I’m not being dramatic here. Without insulin, Riley would die. I want him to know what it’s like to eat a snack without having to jab himself with a needle first. I want him to know what it’s like to not be attached to a machine 24/7. I want him to play sports without worrying if he will go low. I want him to have a functioning pancreas again. To me, anything short of that is just a band aid. Band-aids come off. They have to be reapplied. They cover up wounds. I don’t want him to be “wounded” anymore.

I know that JDRF also funds research projects searching for a cure. (As a side note, they haven’t given one cent to Dr. Faustman.) But they put the majority of their money into projects such as the artificial pancreas. And, that right there is why I have never had a fundraiser for them. I want ALL of my money to go towards a cure.

Don’t get me wrong, I am grateful for organizations like JDRF that are trying to find better ways to manage diabetes. Like I said, when Riley was diagnosed you couldn’t even get a continuous glucose monitor. Now, many people have them. And, in the years since they came onto the market I’ve been told their accuracy has improved quite a bit. Not only that, I now bolus Riley with his pump from across the room via his blood sugar machine. It is quite wonderful.

And, all of this technology is great because it helps improve the lives of those touched by this disease. It helps control sugars, which in turn decreases complications and increases my little boy’s now shorter than average lifespan.

But, in the end, he’s still attached to his pump 24/7. He still could go into DKA from the flu. He could go into a coma from a low. And, my biggest fear, he could go to sleep tonight and not wake up in the morning. All because of Type 1 diabetes.

As parents we all want the very best for our children. We want to see them succeed. We want to see them live their dreams. Some think that better technology is the answer.

Me? I know Riley can live his dreams with or without Type 1 diabetes. But, I would rather see him do it without an insulin pump tethered to his side, without the worry, the emotions, the complications that come along with this disease.

So, I will continue to hope. I will continue to pray. And, I will continue to use that improved technology until the day that Riley does not need it anymore. And, I firmly believe, with all my heart, that Dr. Faustman’s research will lead us there.

**(I have recently began a letter writing campaign to raise money for Dr. Faustman’s research. If you would like do donate, please click here. All donations are tax deductible.)

Home is Where the Diabetes Supplies Are

We just moved into a new house. We have been renters our whole married lives and finally made the leap into being homeowners. I love it. It's so nice to be able to paint whatever color I want and hang as many pictures as I want. There is also something special about just knowing that it's ours.

But, in the midst of all the bliss of finally having our own home, diabetes keeps poking out its ugly little head.

First, it was during the packing phase. I had so much stuff that I'm not sure why I ever had in the first place, let alone know why I kept any of it. Riley's diabetes supplies were in the living room closet. They were kept together for the most part, but over the years some things had gotten separated from the pack. I found too many meters to count. I threw out some and kept some. I had to debate on which ones to scrap. Finally I just got rid of the older ones. After all, we all know that meters are a dime a dozen. Companies are happy to give you free meters. Where they really make their money is with the strips anyway.

In that same closet I came across Riley’s bag. It is a little black nylon lunch bag. We used to keep all of his supplies in it, insulin, syringes, juice, alcohol swabs, ketone strips, glucagon. We took it wherever we went. That bag has been places. I’m not much of a purse kind of girl, but a few years into his diagnosis I broke down and started carrying one with me. It’s very practical for carrying all the needed diabetes equipment. When I finally gave in and started carrying a purse, we retired that bag. After I pulled it out of the closet I turned to throw it in the trash bag next to me. I held it there and let it hover of the bag for a second before I turned and tossed into a storage bin that would be put in the attic. I just couldn’t bare to throw it away.

When I cleaned out the kitchen cabinets, up in the far corner in the darkest recesses of one cabinet I found some more diabetes loot. I then remembered that when Riley was first diagnosed we kept his supplies in a kitchen cabinet. That was back in the injection days. Once he started on the pump there wasn't enough room there for all the supplies and most were moved to the closet. I found a few strays lancets, some insulin syringes, and several alcohol wipes.

I reached in and felt around one last time before moving on. I pulled out 3 small slips of paper. I turned them over to see what they were and stared at them for the longest time. They were prescriptions given to us when Riley was discharged from the hospital. The date in the corner was 10/7/05. Suddenly, I was taken back to that day. I stared at the neatly printed words. They were written by a woman just out of medical school who was very unsure of herself. It took her forever to write the prescriptions. And, when I took them to the pharmacy they were written for over the counter things like alcohol pads, lancets, and ketone strips. They were returned to me and for the life of me I’m not sure why I kept them.

But, there they were, in my hand, a harsh reminder of the day he was diagnosed. All of a sudden I was bombarded with images from the hospital. I slept in the bed with Riley at the hospital. I remember the first morning I woke up and saw Michael sleeping in the chair. Riley was still sound asleep beside me. I woke up, looked at him, saw the IV sticking out of his little hand, and promptly burst into tears. All I could think was “It wasn’t a dream. This is a reality. My little boy will have to deal with this disease forever. It’s never going away.”

I got up out of the bed and tried to get myself together. I tried to stop the tears before anyone saw me. At that moment, the doctor who wrote his prescriptions walked in. She began to blab on about something and when she finally looked at me she saw the tears. She looked at me and said, “Are you crying? Don’t cry, everything is going to be OK.” She looked terrified because she didn’t really know how to handle a crying mother. At the sound of her voice Riley had stirred from his sleep. He sat up in bed. I quickly turned my back toward him and faced the wall. My back was to the doctor also. I forced the tears to stop. I had made a promise to myself that Riley would never see me cry about his diabetes. And, since that day, I’ve cried a river, no an ocean, of tears. But, I haven’t broken that promise I made to myself. I remember as I was turned around she kept droning on and on about something. And, all I could think was that I wanted her to shut up and leave.

All these memories came from just a few pieces of paper, memories that had been tucked in the recesses of my mind. Ones I hoped some day I would forget, but I know now I never will.

We are finally moved into our new house now. I had packed all of Riley’s diabetes necessities up in a box. Instead of unpacking them right away I let them sit in our closet for a little while. Eventually, I got tired of digging through them to find what I needed. I began to search for the best place to put them. I finally settled on a shelf in a hall closet. There they sit: sites, strips, IV prep, cartridges, Glucagon, old meters, a few syringes. They take up a whole shelf.

Once I got them placed in the closet I took the box they were packed in and threw it down the hall. Michael came in and asked what was going on. I told him I was angry. I was angry that I had to find a place for all these things. I was angry that Riley needed these things to live, angry that he always will. Angry that every house he ever moves into will have to have a special place for all the things it takes to keep him alive.

This is the just another example of how diabetes taints every aspect of life. It even makes its mark on a new house. It makes marks on Riley’s fingers, permanent scars on his skin. And, it has made permanent marks on my heart.

A Harsh Reminder

This week I was harshly reminded of how terrible Type 1 diabetes is. I was reminded by a little girl named Eilish. Eilish passed away in the middle of the night because of a disease that she and my son shared.

Most days I'm able to push diabetes to the back of my mind. I count carbs. I help with boluses. I adjust basals. I monitor sugars at half time of soccer games. I ponder what to do about that 2 AM sugar that is a little on the high side. But, somehow, I keep the "bad things" at bay. All the "what ifs".

The first thing I do when I wake up every morning is tiptoe into Riley's room and listen for his breathing or watch for his chest to rise. I've been doing it for 5 years now. It's become somewhat of a habit. I think I had convinced myself that he'll be OK. He's been OK for 5 years now.

But, the story of this little girl, this girl with so much life left to live, has brought all of the "what ifs" flooding back in. I haven't slept well in 5 years. I get up at least a couple of times a night to check Riley's sugars. But, now, my sleep is tempered with something else. My brain seems to be on alert all the time. I can't quite rest. I've had several fitful nightmares where Riley was in a coffin.

It's horrible. I hate this disease. I hate it with a passion. I hate that it can rear it's ugly head and anytime steal away what little bit of peace I had made with it. I hate what it makes Riley have to do on a daily basis. I hate the little black dots it leaves on his fingertips. I hate how it alters his moods. I hate what it did to Eilish, what her parents must be going through. And, I hate that I cannot be sure that it will not happen to Riley.

Yes, it's a harsh reminder that no matter how much you convince yourself that everything will be fine, it's just smoke and mirrors. It's just a way to get yourself through each day. A way to cope with a disease that you are helpless to make go away.

My heart is broken right now. I haven't felt this way about diabetes in a while. I had stupidly convinced myself that everything will be fine. And, this story reminds me that it may not. This story reminds me how fragile life is and how we really don't have the control that we think we do.

The only thing I can do is hope and pray for a cure . All of my fundraising efforts go toward Dr. Faustman's research.

I will do what I can. I will pray for this family. I will pray for a cure. And, I will hope and pray that Type 1 diabetes spares my son from the same fate.

A Five Year Battle

Five years ago today my son was diagnosed with Type 1 diabetes. I don’t have the energy, either physical or emotional to write an actual blog post about it.

Right now I am exhausted. I was up late doing a site change and then up every two hours all night checking sugars. So, yeah, I’m tired. Not just because of last night, but because of the last five years. I’m just tired of it all.

But, I felt like I had to come here and acknowledge this day in some way. I know this blog post isn’t the most uplifting, and I’m sorry about that. I can barely keep my eyes open, let alone put together a coherent post summing up the last 5 years of life.

All I can say is that we’re still here. We’re still fighting. Five years later we’re still determined to fight a battle that seems will never end. Actually, Riley is fighting the battle, I’m just the one on the sidelines trying to make the strategic maneuvers that will hopefully keep him safe for one more day. Today I feel like waving the white flag, but I know I can’t. A little boy who means everything in the world to me looks to me to lead him in this battle that he didn’t chose. The enemy just snuck up on him and we’ve been on the defensive ever since.

He’s been fighting this battle for 1,825 days now. There have been no cease fires called, not for birthdays, holidays, or even the middle of the night.

He needs a cure. It’s as simple as that. He needs a cure.

Another Quicky Update

It seems I always promise a real post, yet always do little bullets. One day, I'll write a real, heart-felt post about diabetes. But, not today.


*** I'll start with diabetes things: ummmmmmm, not much to report. His last A1C was 7.3. I'm happy with that. But, if things continue like they've been lately it should be even lower next time. But, we all know that he could start running high 24/7 and that "great" A1C will be out the window. For the most part diabetes has been behaving itself as much as it can. Riley was playing soccer and baseball at the same time and was on a temp basal quite a bit because of it, but his sugars did well. Right now he's just playing baseball.


*** Speaking of baseball... It was supposed to end this week. But, he made Allstars. While I'm proud of him for making it, I'm not happy that he has practice every. single. day (other than Wednesdays and Sundays). I was looking forward to relaxing on my one month off (July), but it appears that will not be happening. He is playing in a tournament next weekend. Then the Allstar tournament is July 5-11. If they do well it may last longer than that. Still, Riley is excited about it. He didn't think he was going to make it and was a little upset. The smile on his face when they called out his name was priceless.

*** My last day of work for the summer is June 30th and it can't come quick enough. I'm off today and loving it. Even though I'll be busy the whole month of July I'm looking forward to not having to go into work every day.

*** We are planning a trip to New York City in July. We were planning on leaving on July 12th, but because of Allstars I'm looking at going the last week in July instead. I am very excited. None of us have ever been to New York. It's going to be a bit expensive, but it will be worth it. I figured since Holden is getting married next year, this will be our last chance to have a real family vacation with just the four of us. Holden has always wanted to visit New York, so that's what we are doing. If any of you have any tips or suggestions let me know. We are driving up and planning to spend 3 or 4 nights in Manhattan. I plan to use the subway for transportation once we get there. I have a lot of planning to do between now and then. I want to kind of know what we're going to do every day, so we're not just wandering all over the city. Again, any advice on what to do while we're there and where to eat would be greatly appreciated.

*** In addition to going to New York we will be going to Myrtle Beach in July also. We are going on a church mission trip. We've gone several years, but were unable to go last year because my mom was so sick. We've always spent 3 nights before and this year we will be spending 5. I'm looking forward to it. We do that as a family too. And, my future daughter-in-law is going too. We have fun helping others and have some down time in the pool too. And, one day we visit a water park. So, it's also kind of a little vacation.

*** Not enough things to do in July? How about we throw in swimming lessons for Riley? That's right, the one week we don't have vacation, a mission trip, or baseball, Riley will be taking swimming lessons. I wasn't going to sign him up because it was being done the week we were going to New York. Since that has changed I figured I'd sign him up. I'm not doing it because I'm a glutton for punishment and want to spend my entire time off shuttling him from here to there. I'm doing it because we live around water and he loves getting in it. It's important to me that he knows how to swim. Holden took swimming lessons pretty much every year for several years when he was younger. He's not a great swimmer, but he knows enough to keep from drowning. Riley took lessons last year, but still has a lot to learn.

*** My mom is STILL sick. June 20th will be exactly a year since her first visit to the ER. And, to be honest, we're not really any closer to knowing what's wrong with her than we were then. We have been around and around in circles. She's seen every doctor that has been suggested to her and some who haven't. And, they always send her on to someone else, because they can't figure out what going on with her. She has an appointment with a GI doctor next week as well as a urologist. Even after all this time, I always hope that we'll walk in and they'll say: "I know what's wrong with you." But, it hasn't happened yet. I have to believe that it will one day soon. At least she's not bad all the time. She never has a great day. But, she has good days and bad days. I never know how she's going to be from one day to the next.

*** Michael is off for the summer. He is still doing pool work on the side. Currently he and Riley are in Holden's room playing video games together.

*** Holden is home for the summer. He is working a few days a week. He also goes back to his apartment and spends a night here and there. It's nice having him home again. We watched The Book of Eli together last night. He has already seen it, but wanted me to see it with him. It was a good movie. I really liked it, but can see why it wouldn't be for everybody.

I guess that's it. Isn't it enough? Really, when I get time between games, vacations, and swimming lessons I will write a real post. I missed out on diabetes blog week. I plan on doing the posts at a later date. There are some good suggestion given on what to talk about. I'm overdue for a sappy, emotional diabetes post anyway.

Eight Is Great!

My sweet baby boy turns 8 today. I cannot believe how the years have flown.

Happy birthday, little man. You inspire me with your courage and positive attitude each and every day.

I am so blessed to get to be your mom.

Quicky Updates

I don't mean to stay away for so long. I really don't. So, for now, here are some quick updates on life.

** Had my surgery (hysterectomy, kept one ovary) on March 29th. Everything went well. I spent one night in the hospital. I begged the doc to let me go home the night after surgery, but he wouldn't let me. He said there was too much of a risk of bleeding. But, he did take away my pain pump and catheter so I could move around more. So, I came home first thing the next morning and have done well. Probably have done too much on some days. My belly lets me know when I've done too much because it swells. As far as the pain goes, it has not been anywhere near the pain I was in before surgery. Only having to take Ibuprofen for the pain. Have my post-op appointment on Monday and plan to return to work on Tuesday. ( In addition, the two stray kittens (Savannah and Samantha) we got in December had their hysterectomy this week. We've all been lounging around together. Actually, we haven't. They started jumping up on the couch and chasing each other the night after surgery. They took it a little better than I did.)

** My mom is still not doing well. We still do not have any answers as to what is going on with her. She has good and bad days. She has been sick for 10 months now. I've lost count of how many doctors she has seen or how many times she's been in the hospital. So, if you don't mind when you say your prayers include a quick one for my mom.

** Holden is doing well. In a few short weeks his first year of college will be done. I can't believe it. It has flown by. You know, I thought I would die when he left for college, but I didn't. It was rough for a while, but it was also nice to see him out on his own and to know that I didn't do such a bad job raising him after all. He still comes home pretty much every weekend. He will be home tonight. He is going to work first and then he'll come home. He texts me almost every day. I am so proud of the young man he has become.

** Michael and I are still saving up a down payment for a house. It's not easy. We have both been on spring break this week and he's worked most of it putting up and working on pools. I hate that he has to do it. But, it's good money. And, I want a house that we can call our own. Also, since my last post we celebrated our 10 year wedding anniversary. We didn't do anything special. We went out to eat at a local restaurant that night and the following Saturday we went and looked at houses and went out to eat again. (Also, Michael had a birthday yesterday. Happy birthday Michael Alexander. I love you!!!)

** Riley is playing soccer and baseball. Soccer practice started a few weeks before baseball did. Baseball games start a couple of weeks before soccer ends. It makes for busy weeks. He had baseball practice on Monday and soccer practice last night. His first soccer game is Saturday at 11:30 and he has baseball practice that morning at 9:00. It seems like a lot, but he loves it and doesn't want to give up either one. I am glad he is able to play both.



___________________________________________________________________


Now, let's talk diabetes. That's what this blog is supposed to be about anyway.

** A few days after my last post Riley's pump starting unpriming itself. It had done it before but not enough to warrant a new pump (according to Animas). This time they said to send it back. We got another Animas 2020 while we waited for the PING. It didn't take long before the paperwork was straight and he had his new pump. And, it didn't cost us as much out of pocket as I thought it would. To sum things up we love, love, love it. The remote is fabulous!! He can be up to 10 feet away from me and I can bolus him. He got it in Duke blue. (BTW way to go Duke 2010 National Champs !!!)

** Don't really have much else to say about diabetes. I guess that's a good thing and a reason I don't post as much as I used to. What else is there to say? Diabetes sucks, enough said. He has highs and he has lows and he has some sugars in between. He deals with it really well and I'm very proud of him. He is taking on more and more of his care. I hardly ever check his sugar anymore, only when he asks me too. He does all of his bolusing at school, but I handle it when he's at home. He's able to read labels for carbs now. He understands so much about what affects his sugars and what doesn't. I still hope and long for a cure. All my donations continue to go to Dr. Faustman's research. I pray every day for a cure, but have learned to live life as though there will never be one (if that makes sense).

Well, I guess that's it for now. Thank you to anyone who is still reading.

What's Happening

I don’t post on a regular basis anymore. My blog reading has slowed down considerably too. Still, I think about you guys often and even if I don’t type out an actual post, I’ve written many a blog post in my head.

Just wanted to update anyone who might be interested on what’s been going on lately.


● First, the biggest news; Holden got engaged last weekend. He and his new fiancé, Brittaney, have been dating for almost 4 years now. They have set a date for April 23, 2011. That will be the 5 year anniversary of when they first started going out. He’s young and she’s young, 19 and 18. I’m not thrilled about it and would rather he wait until he’s out of college. Still, it’s his choice. He assures me he is still going to pursue becoming a physical therapist. She will be starting college in the fall at the same place Holden is. They both assure me they are going to stay in school. It’s doable, but it will be hard. I am a firm believer that anyone can do whatever they want as long as they are committed to their goal and will work hard for it. Still, he’s my baby and I’m not ready for it. Guess I have another year to get ready anyway.

● My surgery (hysterectomy) is scheduled for March 29th. The closer it gets the more anxious I get. I’m just ready to get it over with so I can stop thinking about the “what-ifs”. I hope to be having a DaVinci robotic surgery. (I have my pre-op on the 19th so will get more details then.) Mainly I’m worried about how speedy the recovery will be. Really don’t have a whole lot of time off of work. The doctor told me I’d be out 2 weeks, but I’ve requested 3 weeks off to be safe. I’m going to try to go back at the 2 week mark if at all possible. That way if Riley gets sick or has a field trip I want to go on I can take a day off for that. Just don’t want to use up all my sick time if I can help it.

Like I said, I’m anxious. I’m starting to work on getting my house in order. I want everything clean and straight prior to my surgery. My problem is I know what I want to do, but haven’t gotten motivated to do it yet. I’m a very last minute person which only adds to my stress level. I’m trying to push myself to get things done now rather than later. My surgery is the Monday before Easter so I know I need to get my Easter shopping for the kids done pretty soon.

I’ve weighed the pros and cons of surgery and the pros far outweigh the cons. The one thing I keep reminding myself when I have doubts about going through the surgery is that I’ve been hurting going on 20 years now. Also, I hurt about 2 weeks out of every month. When you add that up it means I’m in pain about 6 months out of the year. I just thought of that yesterday. It’s staggering, really, to think I’ve given that much of my life up with this. Just ready to get it over with and get on with my life.

● Riley’s been having a lot of lows lately. I’ve been kind of holding off on doing anything with his basals. Usually this sort of thing works itself out. It doesn’t seem to be doing that so I’ll be sitting down tonight and trying to figure out what to do about the lows and his basals. He had a 48 last night (the lowest he’s had in a good while). Usually, he just says he feels low, drinks a juice, and goes on about his business. But, the 48 threw him for a loop. He was shaky and looked scared to death. The low came right at bedtime and thanks to good ol’ rebounds and my overzealous attempt to stop the low, the rest of his nighttime sugars were over 300. He was 188 at breakfast this morning, so was finally starting to come down. His teacher called at lunch and he was 72. That’s how most of his lows have been: low enough to have him drink juice, but not low enough to really make him feel bad.

● I totally missed Riley’s pump anniversary. I’ve remembered it every year but his one. On March 3rd he had been on the pump for 4 long years. That means his pump warranty has expired. At first we were told that once it expired he could get a new pump. Then, I was told that insurance would not pay for another one until his current pump malfunctions. He has an Animas 2020 now. Once this one croaks he will be getting a Ping. Animas told me that once his pump does malfunction they will still send a replacement pump until all the paperwork is done for a new one. That made me feel better because I thought he might have to be without a pump for a while. So, we sit and wait for his pump to do something crazy. He’s had 9-10 pumps over the past 4 years. The last one he got was in September. This one will probably last for years. While I’m not looking forward to the out of pocket expense for a new pump, I cannot wait for the remote. It seems like it will make things easier. Riley currently wears his pump in pockets sewed into his waistband. So, every time he needs insulin he has to dig in his pants and fish out his pump. It will especially come in handy for dosing in the car.

● My mom is doing better, but still doesn’t have any real answers as to what is going on. Over the past 9 months she’s been in the hospital 4 times. She’s been to the ER 5 times at 3 different hospitals. She’s seen 3 neurologists, a rheumatologist, a psychiatrist, a cardiologist, and a gastroenterologist. She’s even had gallbladder surgery. Everyone she’s seen tells her they can’t find anything wrong with her. Whatever is going on is neurological but no one can seem to put their finger on what is causing her symptoms. She got her 3rd neuro opinion from a physician at Duke a couple of weeks ago. He’s given us more hope than anyone else. She goes for a sleep-deprived EEG on Thursday. Her test is at 10:00 AM and she has been told she cannot sleep past 12:00 PM on Wednesday. That means she has to stay awake for 22 hours. I can’t imagine even trying that. Of course, I’m sleep-deprived all the time. What with sugar checks and belly pain I’m lucky to get 5 hours of sleep per night. Luckily, Holden is on spring break this week. He has volunteered to stay with Mom Wednesday night and help keep her awake by playing games with her and stuff.

● Michael and I are trying to save up a down payment so we can build a house. At first, we were talking about buying a house, but we changed our minds about that. We’d rather have something we built together. We have found some land we’re interested in, but are trying to save up enough money to make a down payment on the land and house at the same time. I’m just hoping the land isn’t sold before we can get it. But, if it is, it is and we’ll have to find something else. Saving up a down payment wouldn’t be as hard if Riley wasn’t in private school. I’ve said before that the local public school system here leaves much to be desired. Holden went to private school and Riley is still there. Unless some drastic changes are made to our school system he will be there until he graduates. So, in addition to saving up for the down payment we are also saving up for a tuition payment.

● My wedding anniversary is on March 11th. We will have been married for 10 years. I really do love Michael more now than when we got married. We’ve been through a lot together the past 10 years, the toughest being Riley’s diagnosis. Somehow we always make it through. I love him very much and I am very blessed to have found him. We don’t really have plans to do anything special. We had talked about going away for a couple of days, but had to nix that plan due to a) my mom’s health b) trying to save money for a down payment and c) not wanting to take any more time off of work because I’m already taking time for my surgery. Like I said Holden will be home this week, so I’m sure we’ll go out Friday and eat and go to a movie of something while Holden watches Riley for us. It’s not important what we do, what’s important is that we made it this far and we’re more in love than ever. It’s nice to know I can trust him and that he will always be there for me. Knowing that whatever I go through I don’t have to do it alone is a big comfort to me.


Geez, I guess that’s enough for one day. I really don’t need to go so long without posting anymore. I will try to post again soon, but I’m not making any promises. I’m going to be busy cleaning house and pre-preparing meals…

Kinder than necessary

I started to write a blog post and deleted it. It was just way too negative. I have a lot going on in my life right now. My mom is still sick with no answers, a piece of land we were looking at to build a house fell through, I have to have surgery…

Anyway, not going into details about the negative today. It’s just too easy to get sucked into a black hole when I think about it.

So, a few positives…

** Holden is doing great in college. Last semester he got 4 A’s and 2 B’s. The B’s were in his easiest classes (sociology and music). If he had done what he needed to do in those classes he would have had a 4.0. But, I’ll take a 3.7. It’s not too shabby either.

He’s enjoying college and doing well living on his own. He has yet to bring home even one item of dirty clothes for me to wash. It makes me think I didn’t do such a bad job raising him after all.

Also, his birthday is tomorrow. He will be 19. I can’t believe it’s been 19 years. They really have flown by.


** Riley’s sugars have begun to behave for the most part. He’s had a few lows and a few highs. He was going into the 300s at least once a day, but that hasn’t happened in a while. His nighttime numbers, which have always been a challenge, have been great lately. I’m just going to try and enjoy it while I can. I know tomorrow everything can change and I’ll be cursing his meter again.


** On the diabetes front, Riley’s pump warranty expires next week. I am already in the works to get an Animas Ping. He has an Animas 2020 now and we love it. The Ping has a remote and I cannot wait for that. Right now he keeps his pump in a pocket sewn into the inside of his pants. So, we have to dig around in the pocket every time he needs to bolus. And, when he’s strapped into the car it’s even more of a pain. So, yay to diabetes technology!! I can’t wait to get the remote for his pump.

** I saw this quote in a doctor’s office the other day and it really struck a cord with me. Like I said before, I have quite a few things causing stress in my life right now. But, I am truly blessed all at the same time. Anyway, this quote reminded me that everyone has their own things that they are going through. We often have no idea what the bank teller is going through or our waitress at a restaurant, or even our co-workers for that matter. So, we shouldn’t be so quick to jump to conclusions about people.

The quote is: “"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Truer words were never spoken…

Endo Rant and an Ode to Dr. M

Riley had his endo appointment on Friday. His A1C had gone up from 7.2 to 7.8. I wasn’t surprised. On the way to the appointment Riley and I took a guess as to what his A1C would be. I said 7.8 and he said 8.1. I’m glad, at least, that I was right and he was wrong.

December was pretty rough on his numbers. There were highs and lows (mainly highs) with no pattern to them. Still, I knew I hadn’t been on top of his numbers like I should. I knew I didn’t adjust basals as often as I should. I have no excuse as to why. I just know I could have, should have, done better.

This was our second visit to this endo. Our first visit was quite pleasant. I liked him and he was quite pleased with Riley’s A1C of 7.2 and said his goal for Riley was 7.5. Last time he didn’t recommend much of anything other than a slight little basal increase. He didn’t like that Riley’s basals were a little higher than his bolus, but other than that he was pleased. He did say that sometimes when basals get like that he orders to have the child to go on a set basal rate all day. That was not a pleasant thought for me.

I knew, without a shadow of a doubt, that Riley’s A1C would be above 7.5, so I wondered what the doctor would say this time. I didn’t know him well enough to know if he’d fuss at me or not.

The nurse came in first. She looked at the numbers and graphs I had printed out from excel. She looked at his basal to bolus ratio. I told her we’d had a rough couple of months to which she replied, “I can see that.” Then, she made a comment that he had one night that he was 57 at 3 AM and another where he was 315. She just raised her eyebrows like that had never happened before. But, unfortunately it has, way too many times to count. That is why I have been sleep deprived for the past 4 ½ years.

Then, she wanted to know how often we change sets. I told her every 3 days. She suggested we try every 2 days instead to see if that helped. I told her that I really didn’t want to do that, that a needle stick every 3 days was enough. I also told her that Riley goes low with most site changes, even though I don’t fill his canula and decrease his basal 60% for 3.5 hours. It’s just one of those things. (Not to mention the increased cost…)

She looked at me and said, “It’s because it’s fresh insulin. That’s why he goes low.”

I looked at her and said nothing. I know from my (almost) 4 years of experience with the pump that it is not fresh insulin. That’s what I used to think too. But, there have been times when Riley’s insulin was starting to get low and it wasn’t quite time for a site change and I just put in fresh insulin without changing his set and he didn’t go low at all. She went on to say that since that is what causes the lows that changing every 2 days would make more sense because the insulin wouldn’t seem as new.

Huh? She lost me there. Again, I looked at her and said nothing. Then she said we’d see what the doctor said about it.

She checked out Riley’s pump sites and said they looked fine. Then, she checked out his feet, which, thankfully, were fine too.

Then, I mentioned how I knew his A1C would be up. She went out to check and came back saying it was 7.8. I guess she saw me cringe and she said, “Oh, don’t worry about that. We have kids that come in with 9’s and 10’s.” Then, she shut the door and walked away.

Then, the doctor came in. He said that Riley’s A1C was up from last time but that it was still “very good”. He went on to say that his goal for Riley was 8.0, so 7.8 was just fine. So, let me get this straight? When he was 7.2 his goal was 7.5, but now that he’s 7.8 his goal is 8.0? I don’t get it. I don’t go to the doctor’s office to be pacified. I go there for help. I don’t go to get a pat on the back and to get told I’m doing a good job when I know that I’m not. They didn’t even ask how often I’d been logging and adjusting basals.

Then, the doctor went on to say, “I’ve had kids in here who’s A1Cs were 13 or 14. So, 7.8 is good.”

Let me just stop here. I have NEVER compared my kids with other kids. I have NEVER compared standards for my kids with other people’s kids. I HATE it when people do that. My son is not everyone else’s son. He is my son and I know what his A1C could be. That’s like Holden or Riley making a “C” in a class. They have always been capable of straight A’s. It doesn’t matter to me that everyone else in the class made a C too. What matters is that I know what kind of grades my children are capable of making. I also know that some kids are just not capable of that. Some kids are happy if they make a “D” and they really worked for that D. I know that. I work in a school system. Every child is not the same. And, if my children were only capable of making a C or D, then I’d be quite pleased with a C. But, they are capable of all A’s and B’s so that’s what I expect. I really, really don’t care what the kid next to them made.

If I were only capable of having Riley’s A1C in the high 7’s, then I guess I’d have to be OK with that. But, I know I’m capable of better, at least for now. I also know that once he hits puberty and his hormones go all out of whack I might be elated to have it at 7.8.

Furthermore, I know there are parents reading this right now who would be thrilled with a 7.8 and don’t understand why it bothers me. I know parents who are very vigilant with their children’s logging and adjusting of basals and they still don’t see 7’s very often. For whatever reason, their children’s sugars are harder to stabilize. Which brings me back to my earlier point that everyone is different and shouldn’t be compared to one another.

Now, that I’ve ranted about that for a bit, let me say that the 7.8 didn’t upset me all that much (contrary to all the stuff I just said). I knew that’s what it would be and I knew what I needed to do to see that change. He’s been that high before and I’ve gotten it down. I also know that it happens from time to time and you make adjustments and move forward.

What got me was the constant comparing of how bad his number could have been, that his A1C wasn’t a “bad” as a lot of kids. I kind of felt like I was being chastised for caring about his A1C.

OK, let me continue with my rant, which at this point, is probably incoherent to most of you.

The doctor went on to say that Riley’s basal to bolus ratio was dead-on. It was 50/50 just like it should be. But, you see, I know that Riley does better with it being 45/55 or so. I know that doesn’t seem like a big difference but with his tiny doses, it is. For example if his total daily dose of insulin is 16, then a 50% basal would be 8.0. A 55% basal would be 8.8. To the adults out there, that may not seem like much of a difference. But, for Riley it is a huge difference. And, I know from experience that’s really where it needs to be.

Then, the doctor goes on to say that sometimes parents do too much. And, then went on to say that I am one of those parents. He said I needed to back off a bit and stop checking so often. He said that there was no reason to check Riley 2 hours after he had breakfast because I knew he’d be high anyway. First off, I don’t check Riley 2 hours after he eats unless he says he feels low or something. The only time Riley’s sugars are checked is at meals and snacks and if he says he feels low. He is also checked a couple of times in the middle of the night. I’ve already gone over why we do that. For example, Riley eats breakfast at 7 AM, he is not checked again until 10:45 AM when he is about to eat lunch at school; then, again at 1:45 PM for snack. Excessive, I don’t think so. Often, unless he says he feels low, he’s not checked again until between 5-6 PM when he eats supper.

Secondly, when I’m trying to get his basals right I’ll probably test more. Because, guess what? I don’t want him in the 300s every single day 2 hours after breakfast. That can be fixed most of the time. Plus, how do I know what his carb coverage should be without testing after meals? (Man, you should see me typing this right now. I bet my keyboard is glad it doesn’t have feeling.)

Then, the best part of all, the doctor told me that because I was doing too much for my child, I had probably gotten his basals all out of whack. He didn’t quite use those words, but that’s basically what he said. He then said he had taken Riley’s total basal and divided it by 24 and come up with 0.35. He said he wanted Riley’s basal to be 0.35 all day and all night. Then, he said he wanted his carb coverage to be the same all day too.

I had kept my mouth shut up until then but when he said that I had to say something. Riley’s carb coverage is about the same all day, for the most part, anywhere from 25-27g. But, at breakfast, it is 20g. It has to be. Otherwise he’d be really, really high. When I told him that he said, “OK, we’ll keep his breakfast coverage at 20g”, like he was throwing me a bone or something.

And, I was thinking, “You’re darn right I’m keeping it at 20g. I don’t need your permission to do that.”

Anyway, that’s the gist of what went on. He handed me my instructions and sent us on our way.

I know I’ve made him sound like a horrible person. But, I don’t really think that he is. I think it all boils down to the fact that we had the very best endo in the world before. After you’ve had the best, everyone else pales in comparison.

Dr. M would have looked at those sugars in the middle of the night and said, “Why do you think he was 57 one night and 315 the next? Was it increased activity? Did he eat something different for supper?” And, if there wasn’t anything out of the ordinary she would chalk it up to just one of those things and move on.

She would always ask Riley how he was doing. The question she always asked him, without fail, even when he was 3, was: “Is diabetes keeping you from doing anything you want to do?” She always asked how school was going and how soccer was. During this endo visit Riley lay on the bed reading a book the whole time. The only thing the doctor asked him was what he got for Christmas. Otherwise, it was like he wasn’t even in the room.

Riley always answered Dr. M’s question with a “no”. But, I know that if he ever said yes, she and he would come up with a plan of how to change it.

Also, when Riley’s A1C was up to 7.8 she would say she was OK with it, but she knew I wasn’t so we’d sit and figure out what to do about it. On our very first visit, she brought up how much we were checking in the middle of the night. When I told her why, she never brought it up again.

Dr. M would always make suggestions about what to do and then ask me what I thought. There were times when our opinions differed. She always said that she trusted my instincts and we’d try it like I wanted it. She said more than one time she would look at his basals and wonder why it was like it was and then she’d look at his sugars and see why I had done what I had done.

I guess it all boils down to the fact that Dr. M may have gone to years and years of medical school and she had years and years of pediatric endocrinology under her belt, but, she still realized that, when it came down to it, I was the expert when it came to my son. My 4+ years of experience with his disease trumped her 30+ every time. Because, we all know everyone with D is different. There are no cookie cutters when it comes to this disease. Dr. M got it. I’m afraid many doctors do not.

OK, rant over. I don’t despise Riley’s doctor. I think he’s doing what he thinks is best. I don’t have plans to change endos any time soon. (unless, Dr. M comes out of retirement)

And, by the way, I didn’t make Riley’s basals 0.35 across the board. I made a few basal changes and that was it. I’m not saying that the time won’t come that I might have to try it, but that time is not right now.

When, I was talking to Michael about it, he said, “What would Dr. M tell you to do?” I said she would tell me to trust my instincts and he said that is exactly what I should do.

So, right or wrong, that’s what I’m doing.

Rambling Ranting Time

I’ve had lots of blog posts running through my mind lately. But, due to some sort of virus issue with my computer I’ve been unable to get onto blogger. I finally found a solution to the problem today.

Where do I start?

Frustration…yeah, that’s where I will start. Riley’s sugars have been out of control for the past month or so. He’s gone high several times a day, with no obvious rhyme or reason to it, no pattern, no red- flag- here’s-where-you-need-to-adjust-basals, and, no obvious need for a basal increase. By “obvious need for a basal increase” I mean his ratio is dead on. I learned a long time ago that Riley’s basal needs to be about 55% of his total daily dose of insulin. Well, it is. Yet, still the highs. I say high, but he woke up with a blood sugar of 66 this morning. That, after going to bed with a sugar of 351.

I know I’ve been there and done that before, yet still frustrating. And, I know I shouldn’t focus on his A1C, but I can’t help it. His last one was 7.2. His new endo was amazed at it and thought it was great. Well, we go back next week and, somehow, I don’t think he’s going to be quite as amazed. I’m guessing 7.8, if we’re lucky. Aggggghhhhhhh!!!! I just want to scream. But, experience tells me that it won’t help, it will only give me a sore throat.

Maybe he’s growing? That’s what I usually blame for the wacky sugars. Another problem is that Riley has been out of control hungry lately. By that, I mean he is asking for food on an almost hourly basis. He’s started checking his sugar more frequently claiming he feels low (he rarely is). I think he’s checking because he hopes his sugar is low enough to eat. And, who am I to deny him food? Yet, he’s usually in the 200s when he checks and he just ate an hour before, and……

Agggggggggghhhhhhhhh!!! (Yeah, still not helping.)

Every time I tell him he can’t eat, I feel guilty. Yet, if I let him eat and his sugar is high I feel guilty too. Still, in the back of my mind I have this nagging feeling that by not letting him eat whenever he wants it is going to bring up issues of control later.

Maybe his carb coverage needs adjusting? Maybe I just need to let him eat and let the chips fall where they may. His sugars are sucky anyway, he might as well eat. It doesn’t help that there are still a few holiday treats at the house. Santa is forbidden from bringing chocolate and candy next year.

I guess the best thing to do is let him eat, but keep it low carb and healthy? Sounds good on paper. Doesn’t translate so well into the real world.

I am just so sick of this disease. Diabetes has a way of making me feel like a failure. I feel like I’m not doing enough for Riley, yet, strangely, at the same time, like I’m doing too much. How does that work?

OK, rambling ranting time is over. Any suggestions would be appreciated. I know he needs to eat, he’s obviously growing, but any suggestions on what to do about his basals?

I have good things going on too, lots of them. I am blessed beyond measure. I am excited about what 2010 might bring.

Yet, today, I just need to vent about this stupid, terrible, very bad disease that makes me want to pull every hair out one by one.

Going Solo

The birthday party/sleepover was last Friday. At snack time at school Riley’s teacher called to tell me that everything was fine but that Riley didn’t want to eat his snack. It is VERY unusual for Riley not to want to eat, so I asked her what was going on with him. She said she thought he was just excited about the party. Since the party was right after school, I told her to tell him he had to eat snack since I didn’t know when he’d be eating again.

I picked Riley up right after school and took him to his friend’s house. The friend only lives about 10 minutes away. On the way there I asked Riley why he didn’t want to eat snack. He said that it was his stomach. I asked if his stomach hurt, to which he replied: “No, it just kind of feels like it does before a soccer game.”

I told him that just meant he was excited about the party. Then he said he was excited, but he was nervous too. I quickly went into, “Everything will be fine. You are a big boy and you know what to do to take care of yourself. And, I’ve talked to Mrs. B. about everything and she knows what to do for you too.” It upset me a little to know that he was nervous about “going solo” for the first time. But, it also made me proud that he cared. He could have just had the mindset that he wouldn’t bother with his diabetes while he was there.

When he got to the friend’s house all of the kids where playing in the long driveway. I dropped Riley off to play with them and checked one last time to make sure he had the cell phone in his pocket.

When I got to the house the mom and I chatted for a while. Then, I took a deep breath and handed her Riley’s bag with his juice and machine in it. Once again, I found myself reassuring yet another person that everything would be fine, when I wasn’t so sure of it myself.

As I left I saw Riley running around the yard playing with his classmates. Right then I felt a peace about it. I knew I had made the right decision to let him go to the party and to let him try it on his own.

Not only did I leave him at the party alone, but then I left to go shopping an hour away. Of course, my mom and Holden where only a few minutes away from Riley if anything were to arise that Riley couldn’t handle on his own.

Fortunately, nothing like that ever happened.

Riley called at around 5:30. “Hey, Mom, my sugar is 190 and I’m getting ready to eat pizza and some chips.” I told him to call me back as soon as he was done and tell me how much of everything he had eaten.

About 15 minutes later he called again. “Hey. I ate one piece of pizza, 3 cheese doodles, a cookie, and a piece of cake.”

I asked him if he ate the pizza crust too so I’d have a better guess of the carb count. I did the best I could estimating carbs without actually seeing the food. He bolused while on the phone with me and then, he was off to play some more.

At around 9:15 I hadn’t heard anything else from him. I knew he probably needed to eat a snack soon so I called him.

“We’re outside starting a fire to roast marshmallows.” I told him to call me when he was done.

A little while later, “I ate 2 marshmallows and my sugar is 180.” Since I didn’t know the carb count right off hand I asked him to ask the mom to read out the serving size and the amount of carbs. Once again, he bolused while on the phone with me.

A few minutes later the phone rang again, “We’re having weenies too.” I made sure they were not putting them on buns before I told him not to worry about the carbs for the weenies.

I didn’t hear from him anymore that night. Michael went to pick him up at the designated time, 1 AM. He said they were lying in the floor watching a movie and that most of the kids were already asleep.

I was sitting on the couch waiting when they pulled into the driveway at about 1:15. The smile on Riley’s face was priceless. A check of his sugar before tucking him in reveled that it was 71. He drank a juice and got a basal decrease and drifted off to sleep.

The night was a complete success. I am so proud of my little man for doing such a great job at the party. He did everything just like he should. It’s just another assurance that he really is going to be OK and that this disease does not hinder him, it only makes him stronger.

What if....

The sleepover that I posted about earlier is Friday. While Riley will not be spending the night, he will be attending by himself.

Riley has never been on his own at a birthday party before. I always attend parties. This same boy had a party last year and Michael and I were the only parents who stayed. I tried to blend in, but somehow don't think anyone thought I was really a 7 year old boy.

Like a drug dealer I would pull Riley over to the side. There were a few whispers and a black bag and discussions of being high. Then, I'd deliver the drug and he'd run off to play some more.

Riley has gotten to the age that he really wants to go on his own. And, I'm OK with that. Or, at least I'm trying to convince myself that I'm OK with it.

Riley checks his own sugars and gives his own insulin every day at school. I know he knows what to do. I know he'll be OK. Plus, I've given the mom a heads up about what needs to be done. Riley is going to take a cell phone with him. He will call me at every sugar check and every time he eats. I will count carbs over the phone the best I can and pray for the best. My biggest fear is lows. I don't mind if he runs high as much as if he has lows while there.

As I write this he has fallen asleep on the couch. This after a pretty brutal low that struck with over 2 units of insulin on board. I decreased his basal and he got a snack and a juice, but it still kicked his butt. I just decreased his basal a little more. I will sit and wait for the impending high.

What if this happens at the party? I don't know. I'll deal with it the best way I know how. And, I've learned over time you just can you live your life for the what ifs.

Even though I've learned not to live according to the what ifs, they still scare the hell out of me.

Just When I Think I'm Out, You Pull Me Back In

I just wanted to say a big thank you to everyone for your kind comments after yesterday's post.

I have been neglecting this blog for quite some time. I do check in on the occasional D-blog every now and then and even comment sometimes. But, I've been out of touch with D-blog ville for a while.

Even so, whenever I need you guys you are always there to lend an ear or a virtual hug.

I cannot express how your comments have helped. First, to know you've had the same issues with sleepovers made me feel like I'm not alone and neither is Riley. We are all fighting this thing together and doing it to the best of our ability. We all screw up along the way because we are human. I know that all I can do is make what I think is the best decision at the time and learn from that and move on.

Also, I really felt very guilty for the ice cream treat, but you guys made me feel better when you said you would do the same thing.

When Riley was diagnosed I mainly worried about what the highs and lows were doing to his body. But, as he grows older the emotional and mental aspect seem to bother me more. I guess maybe because I'm a nurse at a high school and see how much certain things can affect a child's life. Parents play a HUGE role in the mental health of their children and I just don't want to screw it up. There is no rule book and we're all just really winging it.

I know that how I handle his D now will help him handle it in the future. Sometimes I just don't feel strong enough to handle it like I should.

It's nice to know I can come here and you guys will help provide that strength for me.

Sometimes You've Just Gotta Let It Out

I haven’t come here to vent in a long time. Well, today I’m breaking that dry spell.

Let me start off by saying: I. Hate. Diabetes. With. An. Intense. Passion

Ahh, I feel better already.

Riley’s sugars haven’t been behaving lately. Well, when do they ever behave? But, for the past couple of months I’ve been able to whip them into shape pretty quickly when they did get out of line.

He has started running high quite a bit. I went from making basal adjustments every 2-3 weeks to making basal adjustments weekly, sometimes 2 times a week, with little results.

I knew it was coming. I’ve been around D long enough to know that, but still it pisses me off every time.

Couple that with the fact that Riley has been invited to two birthday parties. And they are both sleepovers!!! Oh, the joy.

When I got the mail yesterday I opened an envelope and received the first invitation. As I read it I could feel the tears forming in my eyes. I knew immediately that he couldn’t actually spend the night. It’s just not doable right now. Yet, it made me so mad that he couldn’t. It just gave me another reason to hate diabetes and what it does to my child. I dreaded telling him that he couldn’t stay. I don’t let him use diabetes as an “excuse” not to do things, but there I was about to tell him just that, that he couldn’t do something because of his diabetes.

I was sitting on the couch thinking of how to approach the situation when he opened his book bag and handed me another envelope. “B. is having a sleepover for his birthday!” He beamed as he handed me the envelope and my heart sank.

B. is Riley’s best friend. I’m sure Riley had been thinking of how much fun they would have all day. I could feel the tears stinging my eyes again. A million thoughts ran through my mind. What if I asked B’s mom to check his sugar? What if I snuck in at 3 am and checked it myself? What if I gave Riley a cell phone and called and woke him up to check himself?

I quickly realized that none of those were feasible. You see, we have always checked Riley’s sugar during the night. There are not many nights that I don’t give insulin or make a basal decrease. Riley has never woken himself up when he was low. Not checking is just not an option. And, putting that on someone else to do is not an option either. There are just too many variables to consider.

Then, I got to thinking. Riley is only 7. I’m pretty sure I wouldn’t have let Holden spend the night off with a friend at that age. So, I used that approach instead. Besides, due to a comment Riley had made earlier in the day I really didn’t want to use diabetes as the reason.

“Riley, I know you really want to spend the night at B’s house, but I think you’re still a little too young. I wouldn’t have let Holden spend the night away at your age either.”


“How about if I talk to B’s mom and see what time bedtime will be and I will pick you up right before everyone else goes to bed? Then, you’ll really only miss the sleeping part.”

“OK”, he said. But, I could tell he was disappointed.

Would I have let him spend the night off if he didn’t have D? I don’t know. I really can’t answer it. He does have it. I don’t know how to make a decision about him without taking diabetes into account. I know one day the time will come for a sleepover, but not right now.

Not long after this conversation Riley said his sugar felt low. It was 65 with 1.8 units of insulin on board. For Riley, that is a ton of insulin. So, I decided to take him for ice cream.

Yes, I just got through saying that Riley had been running high for days. Maybe ice cream wasn’t the best decision at the time. But, because of something Riley had said earlier I did it anyway.

Earlier, before I saw either of the invitations, I told Riley we had to go on and change his needle. It was a site change day anyway and he had a sugar in the 300s and one in the 400s at school. I knew it needed to be changed soon.

Riley was giving me a hard time about it and really dragging his feet. I told him it was important to go on and get it changed because if he didn’t his sugar might be in the 500s.

He looked right at me and said, “I don’t care if my sugar goes into the 500s!”

My stomach lurched. “Why not?”

He shrugged his shoulders, “I don’t know. I just don’t care.”

I left it at that. I did the site change. And, then when his sugar went low I’m not sure why I decided ice cream was appropriate.

Well, yes I do. I felt guilty. I felt guilty because I can’t “fix” him. I felt guilty because he really shouldn’t have to care what his sugar is. He should be able to eat all the ice cream he wants without worrying what it might do to his sugar. And, I felt guilty because he’ll never be able to do that, at least not without consequences.

We got in the car. On the drive over I glanced at him in the rear view window. The glow from his DS was on his face. He looked so sweet. And, once again, the tears welled up in my eyes. All I could think was, “It just isn’t fair. Why couldn’t it just be me?”

I don’t know why diabetes gets to me like that sometimes. It is a very rare occasion when I let diabetes get me down anymore. But, it still happens. And, every time, it shocks me, like I thought I was immune or something.

Riley turned off his DS and I took it as an opportunity to start a conversation.

“Hey, Riley, earlier today when you said you didn’t care if your sugar went in the 500s or not, why did you say that?”

All I got was a shoulder shrug.

“Did you really mean it?”

“I don’t know.”

“Well, you know it’s OK to get angry about diabetes sometimes, but you always have to take care of yourself. Sometimes your sugars are going to be high and there really seems to be no reason for it. But, if you know how to keep it from happening, then you should always try to do that. You should always take insulin whenever you eat. And, you know you shouldn’t eat ice cream and sweets every day. No one should do that, sweetie, even me.”

“And, even I eat things I shouldn’t. I eat things that have too much fat in them and that’s not good for me. But, I try not to do it all the time. So, I know that sometimes you may eat things that you shouldn’t. But, what is important is that you always take insulin for it.”

“Do you understand?”

“Yes. Like it’s OK to eat cake at B’s birthday party. I just don’t need to eat stuff like that every day. And, I just need to call you and ask how many carbs it is so I know how much insulin to take.”

“That’s right, little man.” I’m trying to suppress the uneasy feeling I have from having him go to his first birthday party by himself. I’ll deal with that later.

As we’re waiting in the drive-thru for his chocolate ice cream cone, Riley asked, “Hey, Mom, how am I ever going to get to go to a sleep over? What will I do about checking my sugar in the middle of the night? Maybe I can just set an alarm clock and check it myself.”

“Maybe”. And, there’s the damn tears again stinging my eyes. My 7 year old should not have to worry about things like that. He just shouldn’t.

Much to my chagrin the cone was piled high with chocolate ice cream. But, Riley enjoyed every last carb-filled bite of it. And, his sugars ran high all night long because of it.

And, his sugars haven’t been under 200 today until a few minutes ago when it was 150.

I think I can deal with the sugars if that’s all there was to deal with. It’s the other things that really get to me. Things that affect his psyche. Things that make him feel different. Things that no child should have to worry about.

The sugars will eventually come down. But, I don’t know how long these emotions are going to affect him. And, that’s what really bothers me.